Today is Rare Disease Day and I have put together this ‘sample’ to share: in hope that it may get people thinking and talking about the realities of Postural Orthostatic Tachycardia Syndrome (POTS) and the people that live with it.
The purpose of Rare Disease Day 2018 is to raise awareness, with policy makers and the public, of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a public health priority.
I’m here saying this today because, during the difficult process of getting diagnosed last year, I was told that some of the conditions I was presenting with were ‘rare’ and ‘very unlikely’.
But I feel that it is important that we understand now that this condition is not really rare.
It is rarely discussed, rarely diagnosed, and in desperate need of becoming a pubic health priority: